Nephrotic Syndrome. In November of 2022, Lucy woke up one morning with puffy eye lids. Initially thinking nothing of it, mom and dad monitored the situation and carried on. A week later, Lucy was in the ER. Her Nephrotic Syndrome caused severe edema, hypertension, high blood pressure along with other complications. Over the course of the next 12 days, Lucy underwent daily blood draws, tests and multiple IVs as we tried to get a handle on her situation. At one point, her syndrom made her so dehydrated and water constricted that we were no longer able to extract blood or put in an IV. Lucy had to receive a PICC line in order to continue treatment. 

The most common form of Nephrotic Syndrome is called Minimal Change Disease, accounting for approximately 90% of cases. In those cases, high dose steroids are the first line of treatment. While we hoped to put this experience behind us, Lucy relapsed a few weeks after responding to steroids. In January of 2023, we went back into the hospital for 8 more days, undergoing a renal biopsy to officially diagnose Lucy's condition. It was discovered that Lucy had scarring on two of her kidney filters - clinically diagnosing her with Focal Global Glomerulosclerosis - accounting for 3 out of every 100,000 children a year - a very rare and tricky disease to treat. 

Since the time of diagnosis, Lucy has relapsed 4 additional times. Because of the long term side effects that come from being on prolonged steroid therapy, Lucy had to undergo an infusion therapy called Rituximab this past August. Rituximab will deplete all of Lucy's B cells and prevent her from being able to generate them for some time. This will mean that Lucy will not have a first line of defense to fight off infection or illness. While we continue to fight the emotional and physical battle that is Lucy's disease, we wanted to take a moment to share another side of Lucy's story. 

Lutheran General - Child Life Services. All proceeds of this fundraiser will go to Lutheran General's Child Life Services Department. Through the course of our stay at Lutheran General, the Child Life team comforted and consoled Lucy, mom and dad. They provided music therapy services where someone would come into Lucy's room and sing songs with her. They provided art therapy services, supplying Lucy with arts and crafts to distract her. When we returned to the hospital in January, the Child Life team had Lucy on file, immediately greeting her with Peppa Pig toys (her favorite), sticker books and even treated her to an ice cream sundae. We have to get Lucy's blood drawn frequently, sometimes twice a month. Every single time we show up to the hospital, the Child Life team gives her a stuffed animal. This past August during Lucy's infusion therapy, Child Life checked in on us immediately, asking if there was anything we needed. 

Lutheran's Child Life team goes out of their way for sick children and is a group filled with loving and caring professionals. No child should ever have to deal with chronic illness. The money we raise will go back to these brave kids who are fighting their diseases. This money will support the team that supports these little super heroes. 

We thank you for your support.